Last summer, a person close to me with Parkinson’s disease whom I shall refer to as the Patient for this column, found himself growing more tired, and unable to keep his eyes open by late afternoon. During a visit to his neurologist in September, his doctor noted his symptoms and gave him samples of a new medication to try, telling him that it was expensive.
Within two days, the Patient was his old self again and seemed like he had gone back in time to an earlier stage of Parkinson’s. He was alert and responsive into the evening, and his wry humor returned, which is always a key indicator of his health. He got more work done at his desk, organized the bills and checkbook and was able to make appointments.
Before the new medication, the Patient had been losing weight and got tired while eating. With the new medication, he was eating more, persisting through what was a laborious process and no longer saying “I’m done” or “I’ve had enough,” and his weight stabilized.
When the medication samples ran out, the drug company gave the Patient a free month’s supply, which ran out in late November. After an appeal, the insurance company, or as I’ll refer to it as the un-insurance company, refused to pay for the expensive medication. As a result, the Patient went backward again and struggled to get through the day.
After another appeal, the un-insurance company offered Ritalin, of all things. Not wanting a fuss, he accepted it. Within hours of his first dose, he noticed a strange side effect – worse tremors. His whole body jerked wildly. He was anxious, worried about money and issues that usually don’t consume him. He found it hard to make decisions, stopped reading the paper and seemed overwhelmed. He tailed off going to gym, and papers piled up on his desk, which wasn’t like him at all. By early January, the Patient had regressed to slowed-eating, reduced appetite, red-rimmed eyes and drowsiness. He fell asleep at supper, his head dipping down nearly to his plate. That very night he reported having what his neurologist later called “a full-blown hallucination,” a new symptom.
The neurologist was asked to send another appeal, which involved extensive medical notes – an extra demand on doctors who don’t get additional payment for doing so. Meanwhile, the un-insurance company sent 30 more tablets – federal law requires it for a medication under appeal.
As before, the Patient responded well to the medication – bright, functioning well, a return of humor, much more awake. His desk was mostly cleared off and he was organizing the paperwork for his taxes. The next evening he worked for hours to get a TV working again. He had technical drawings spread out and called the cable company – a task that would have been impossible a few days earlier. Clearly, the expensive medication is the ideal choice for him. Yet, the stalling tactics continue.
Pharmaceutical companies and our medical system exist to deliver health care products and care itself to the Patient and other patients like him. Government and private medical research is funded to identify new medications and medical advances, and yet so many people still struggle to get medically appropriate care. It begs the question: What good is a miracle medication if insurance companies won’t cover it?
For decades, the Patient paid health insurance premiums, yet, he, his generation and likely generations to follow have no assurance of the future. It feels like a betrayal of a whole generation coming up. All the years of work and paying taxes, paying into Social Security as part of a social safety net, seem to be under siege. Meanwhile, it seems those in power positions rarely go without, or have to struggle through multiple appeals to gain access to the right medical care. The goal appears to be how much health care can insurance companies deny, rather than how effective, humane medical care can be provided.
Martin Buber, the great Jewish theologian, wrote that there are two ways to “be” in life. One person thinks that he or she is the only one in the world who matters – “What’s in it for me?” “Look out for number one.” This kind of person sees everyone and the earth itself as an “it.” Others don’t matter. With this “I-it” orientation, other people exist just to manipulate and use. The Patient lives the ancient way, what Buber called the “I-Thou.” He is a gentle man, a retired minister. He has worked since he was 14, always had a job, provided for, loved and protected his family. He was much loved by his employees, gave handsomely to charities, was active in the community, was always giving back to others. In ministry, he was loved and respected.
In Buber’s “I-Thou” philosophy, the other person is sacred, has an inherent worth and dignity. This creates an attitude whereby the world and everyone in it is precious. In this way, everyone is sacred.
The Patient saw – and sees – the goodness and spirit in everyone he ever met. It’s the only way he knows how to live – to treat each person as an equal, as having human dignity and an inestimable worth.
Which way do you live? Which way will we as a nation live?
Gretchen Robinson is the former Spiritual Care Coordinator for Community VNA Hospice. Contact her at firstname.lastname@example.org.